Sonya's Story

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Sonya's Story was created to spread awareness of a rare genetic disorder known as CDKL5 and all that comes with having a mutation on a CDKL5 gene. Our purpose is to also raise money to help fund research to hopefully one day find a cure so no child has to suffer from debilitating seizures, GI discomforts, Cortical Vision Impairment and various other problems that come with having a mutation on the CDKL5 gene.

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Address: 6101 N 5th Place, PhoenixWeb: Sign in to see organisation websiteICO: 814172268

Sonya's Story A Journey Through CDKL5 Drop Down Menu Sunday February 2 2025 Five years Tuesday December 31 2024 2024 My hands hover over the keyboard my mind empty of thoughts. Im stuck at a loss for words. This feels fitting because since I started this blog in 2015 2024 is the first year Ive written only seven entries. The more I try to focus on finding words the more tears fill my eyes and that familiar discomfort in my chest grows.

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Peter

What role do community initiatives, like playgrounds and street cleanups, play in supporting families affected by rare diseases?

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Sarah

How can NGOs effectively honor the memory of individuals like Sonzee while also promoting awareness for rare conditions such as CDKL5?

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Joanna

🌟 It's heartwarming to see how you continue to celebrate Sonya's life by creating positive change in the community. Your commitment to spreading awareness and funding research means so much. Together, we can make a difference!

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Martin

❀️ Thank you for shedding light on Sonya's story. Your dedication to raising awareness and honoring her legacy through community efforts is truly inspiring! Let's keep pushing for a world where no child has to suffer from CDKL5.

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Phoenix

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